Hello, my name is Evie and I’m 19 years old. If you could take some time out of your day to read this I’d be so grateful.

I’m fundraising to get better supportive seating on my power wheelchair to make me safe, comfortable and greatly help my independence.

I got this amazing chair (my dream make and model), almost new, at an incredible price and it has so many things perfect for me. However the seating is not adequate for me to use for longer periods and to support my postural needs long term.

I live with multiple complex disabilities, some of which have progressed overtime, and mean I am severely disabled. You can read more about how I am affected later in this description.

We were able to use my small amount of child trust fund money, which would have been used towards something like my first car if I was able to drive, to initially buy the chair. But the seating is just too much and I am in the process of moving into a supported living flat and the costs of furnishing that along with other everyday and additional disability related expenses is a lot and we cannot magic up £5000. My family and friends have already helped out with many things in my 19 years of life and we’ve done a go fund me for my manual chair before so I feel incredibly guilty asking for help again but people have helped me realise I desperately need and deserve this.

Currently, If I am going out I have to pick between being able to be out for a long time - supported and comfortable but not being able to move myself around much in my manual wheelchair, or being able to go wherever I want, when I want in my powerchair but being in so much pain and practically falling out the sides of my chair and having to leave to go home early.

I use a specialist manual tilt-in-space wheelchair that I also fundraised for a couple of years ago, it is amazing and as light weight as possible with the postural support I need on it. But still quite heavy. I am struggling a lot, overtime, to move myself around independently in this due to my disabilities. This is having an impact on my mental health.

I will still use my manual wheelchair for specific outings such as where the terrain and access is unsuitable for my powerchair, and to exercise my muscles, and it is a good idea to have it as a backup incase of breakdowns etc but long term I need to transition over to powered mobility.

Until the pain gets really bad, in my power chair I feel free. As free as I’m going to feel, in my daily life, as I felt before I lost the ability to walk. I love being able to ‘walk’ with my family and friends and control where I am going, hold hands with my boyfriend, go really fast in open spaces and spin around to regulate myself or when I am bored! I can also tilt myself back and raise the height of myself independently.

I am eligible for a wheelchair via the NHS and have had one before but it was incredibly bad quality, uncomfortable and I could not move it myself. And the NHS will not fund me a power/electric wheelchair mainly due to me having seizures (despite me being supported by at least one other person 24/7, my big seizures being largely controlled by medication and me getting warning signs in my body before I have a seizure.) I also took a personal wheelchair budget from the NHS to partially fund my manual chair, which means I cannot have a new wheelchair from the NHS for a few years anyways even if they did fund me an electric one.

We also have used charity grants for my manual wheelchair and my standing frame so cannot apply again for some time.

I am a full-time, non-mobile wheelchair user which means I cannot walk and need a wheelchair to go anywhere. I also have great difficulty sitting unaided, and also struggle with my head control and using my arms and hands. I use a hoist to transfer.

I have quite complex difficulties which affect me head to toe; I am Autistic and have other developmental and mental health conditions. I have a mild visual impairment and I recently found out I have moderate hearing loss. I also have speech and communication difficulties and sometimes use a communication device.

I have Ehlers Danlos Syndrome which is a genetic connective tissue disorder that causes problems with my joints, ligaments and organs/body systems;

My joints can sublux (partially dislocate) several times a day, I experience chronic pain and fatigue. I have dysautonomia which affects my blood pressure, heart rate, temperature regulation and more and causes me severe dizziness everyday. My swallowing is weak and uncoordinated so I have a gastrostomy (PEG) feeding tube which most of my fluid intake and medications go through. I have had operations on my stomach as it didn’t function properly causing severe nausea and vomiting for over 2 years. I have intestinal dysmotility and neurogenic bladder. I rely on bowel irrigation daily and have a surgical (supra-pubic) catheter to drain my bladder. I have non epileptic and epileptic seizures (my tonic-clonic seizures are currently well controlled). I also have scoliosis (curvature of the spine) and other postural issues which need to be supported with special seating in my wheelchairs. I also have neuro-muscular issues which present similarly to quadriplegic cerebral palsy and cause me to have both very stiff and floppy muscles (spasticity and hypotonia), and I experience muscle spasms.

I take over 10 medications a day to help with some of these things and I require 24/7 support. Despite all of this I live a full life, attend college (although I’m having a year out), have an amazing boyfriend, friends and family and am involved in lots of things. My power wheelchair has already given me so so much independence and will continue to do so once it’s set up fully for me.

Thankyou for reading. If you can, sharing this GoFundMe would help me out a ton. And if you are able to, donating would mean the world to me.